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Avatar universal

Lyme test results and symptoms.

So 5 months ago i woke up to get ready for work.. my ears started ringing i noticed lights were too bright and i felt off and weird.. i thought ok ill be better soon.. weeks later i feel worse i had to quit my job.. tingling face..pressure in my head couldn't clear my ears floaters in eyes couldn't look at anything or go outside because it bothered my eyes so much.. my neck was KILLING ME..many doctors told me allergies/then anxiety depression/stress. okay awesome ill take zoloft and ill be better.. many antibiotics and anti depressants later and I'm still feeling terrible.. all MRI ( head and neck..clear) ENT says my ears are fine. i got the pressure out of my head some how and started feeling better i do feel better i do feel better then i did for a while but i still have the symptoms on and off..and i will be fine and then i will feel just drunk or really off and terrible ears still ringing and the pressure in ears is still there.. also i feel like my hands aren't working right? and when i pull my left eye down ( to put make up on my inner-lid) my right ear twitches and my eye..
i went to a nuerologist and demanded to be tested for lyme i had high cardiolipins 2 red flags for lupus but the neuro said he was not worried about it and didn't think it was lupus (referred to rhumetologist) i have also had random cramps in my body fingers wrists legs butt.. (not unbearable though) NECK pain .. MY QUESTION;
i got a lyme test from the neuro.i call the neuro for the results and the nurse tells me hold on she doesn't understand and has to ask doctor so i wait.. she comes back and tells me the first results were high POSITIVE (5) but they waited and re tested my blood and it was negative and they are going with the second results. SOMEONE PLEASE HELP have you had this experince.. my dr doesn't know what to do and i don't either.. do i have it why would it be positive and then negative.. i want my life back!!!!!
DOES THIS SOUND LIKE LYME.  19 yr old female with no prior health problems.
3 Responses
Avatar universal
Welcome to MedHelp Lyme -- you give a well-stated history of your ailments, and communicating that to the doc you locate to work with will be very helpful.

One thing to remember about Lyme is that it affects each of us a bit differently, which makes it hard to compare notes of all our symptoms among ourselves, but there are often similarities in symptoms that remind us that know we are not alone.  

The symptoms you describe of light sensitivity, ringing in the ears, eye floaters, painful or aching joints as you have in your neck -- all these can be symptoms of Lyme, but at the same time, others of us didn't or don't have those specific signs.  That is what makes the docs so confused.

You say you had an MRI (head and neck ... a clear test) and the ENT [ear, nose, throat] doc says your ears are fine despite ringing etc., and that those are not uncommon in Lyme as well.  You say that you "still have the symptoms on and off..and i will be fine and then i will feel just drunk or really off and terrible ears still ringing and the pressure in ears is still there.. also i feel like my hands aren't working right? and when i pull my left eye down (to put make up on my inner-lid) my right ear twitches and my eye."  Everyone's experience with Lyme is unique, but often the symptoms have similarities with what some others are also experiencing.

Neurologists should be among the docs who know the best about how to diagnose and treat Lyme, but sadly "the neuro [who] said he was not worried about it" ... well, ...  that's not an uncommon reaction from a neurologists, who often really don't understand Lyme.  Same with rheumatologists.  And so on.  

You say:  "MY QUESTION;  i got a lyme test from the neuro.i call the neuro for the results and the nurse tells me hold on she doesn't understand and has to ask doctor so i wait.. she comes back and tells me the first results were high POSITIVE (5) but they waited and re-tested my blood and it was negative and they are going with the second results."  I would get copies of ALL tests done and keep a set at home to copy and show a future doc.  Lyme is tricky like that.

Again, this is not an uncommon kind of confusion for the docs.   You ask:  "do i have [Lyme and] why would it be positive and then negative.. i want my life back!!!!!"  Lyme was identified only quite recently, and the docs who 'discovered' it then set up the list of symptoms to diagnose Lyme and how to treat it, but they forgot that Mother Nature is always making mischief.  Lyme and other infections the 'Lyme ticks' often carry are not well-understood by many in the medical profession, who are accustomed to ailments being fully understood ... but it just doesn't work that way with Lyme.  You'll figure it out, not to worry.
  
"DOES THIS SOUND LIKE LYME.  19 yr old female with no prior health problems [but with current Lyme-like symptoms."  Yes, it could well be Lyme, and the ticks that carry Lyme often also bring 'bonus' infections such as babesia and ehrlichiosis and a few others that often need separate testing and different treatment meds, so keep an open mind and listen to your body and mind.

The good news is that there are docs who do understand Lyme and know how to diagnose and treat it, and that I where I would go if I were in your situation.  ILADS (International Lyme and Associated Diseases Society) is a voluntary group for MD in many places, and finding an ILADS member doc that you are comfortable with and who is well-thought of is what I would do.  If you search 'ILADS' online, there is a webpage that run by ILADS, with a referral function to help you find a Lyme doc near you.  We are still in the early years of understanding Lyme, so if you get stuck with a doc that doesn't seem to know what s/he is doing, then quietly take your test results (ALWAYS get full test results 'for your file' before leaving the doc's office) and keep all the test results at home, to share with another MD if you need to switch docs.  

Sites like this one are wonderful places for support and suggestions and even for finding a good Lyme doc near you.  We do NOT generally post MD's names on sites like this, because in some states, the medical 'establishment' wants to crack down on more advanced thinkers among Lyme docs, so we tend to use private messages on sites like this, in order to share which docs we have used and liked.  Our very own little underground!  And you will note that we *avoid* mentioning Lyme docs' names here, but using 'private messages' between posters here is generally not a problem.

I'm sorry you've encountered some of the less helpful docs on your quest to get well, but once you locate a good Lyme doc, things will sort out.  And as with all things cutting-edge, you may find that a doc that was promising at first may not be so good a bit down the road.  So keep your antennae up and change docs if need be.  

(It took me 20 MDs before one finally tested me for Lyme AND GOT A POSITIVE RESULT! --  but that doc told me very sweetly that I could not possibly have Lyme because I wasn't sick enough.  !?!?!?!?  I left that office and found a wise and well-established Lyme doc not far away, and once I was tested and treated, I returned gradually over several months to the old me.  

If there are no helpful local Lyme groups near you, then sites like this one are invaluable -- and you can also go to the ILADS website and request referral to a member doc near you.  Not all Lyme docs are great, and if you find one that seems not on top of things, then quietly switch to another.  

Sorry this is so long, but it's worth digging around to find a good doc who knows how to diagnose and treat Lyme and other co-infections the 'Lyme' ticks often also carry.  Let us know how we can help ... and try the ILADS referral function as well as local groups and docs who are well thought of in the Lyme community.  All these people are out there, it just takes a little looking around.  

Best wishes to you -- !  Let us know how we can help.  ...  and PS, we do NOT as a rule put the name of any Lyme MD out in the open on sites like this.  The docs who don't really understand Lyme are often heavy-handed and may try to suppress the *good* Lyme docs ... so we don't generally put the Lyme docs' names out in public here:  names are traded through private messages on this site.  

Whew!  Time for me to go to bed.  :)   Sending you all good wishes -- let us know how we can help.
Avatar universal
But why did i get a positiveresult and then a negative? Wouldnt a positive a high one at that mean i have it? Inwoke uo today with my elbow ankles and toes cramping and a swollen throat domt even wanna get out of bed!!
Avatar universal
Sorry to be so long responding ... just saw your post from three days ago.

When the first test was positive and the second one was negative not too long after the first test, and assuming you had no antibiotics or other meds in between the two tests, then I would have the same questions you do.

Here may be part of the answer:  as a group, neurologists are often quite skeptical about Lyme disease and do not tend to jump on it with appropriate treatment.  Why your test results declined so sharply is something I don't understand, and I personally would want another doc in a different specialty (not neurology, since neurologists are often skeptical about Lyme generally) to review both sets of tests already done and to perhaps run some other tests.  

There are several different Lyme tests, and some are better than others ... and given that neurologists are often not inclined to take Lyme very seriously, they may not use the most current tests.  I dunno, but I'd see a different doc for a second look.

You say:  "MY QUESTION;  i got a lyme test from the neuro.i call the neuro for the results and the nurse tells me hold on she doesn't understand and has to ask doctor so i wait.. she comes back and tells me the first results were high POSITIVE (5) but they waited and re-tested my blood and it was negative and they are going with the second results."  I would get copies of ALL tests done and keep a set at home to copy and show a future doc.  

Bottom line:  I would have the same thoughts you are:  if there was a positive result and then a negative one, I would want the doc to give me copies of all the test results ("for my file" is what I always say, with a smile ... and I think the doc is legally obligated to give you the copies).

Let us know what you do and how it goes, okay?  The medical community is in chaos when it comes to Lyme disease, so keep after them!
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